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Graves

2 years ago I was treated with synthroid for hypothyroidism.....I had positive antibodies. My dr checked my blood levels every 6 months and recently the TSH was decreasing (0.004) and my T3  (5.3) and T4(2.01) were elevated.I also had receptor antibodies (2.5).  The dr. discontinued my synthroid, but the labs remain the same. Except for some intermittent anxiety, I don't have any other symptoms of Graves. The doctor wants to discuss treatment options. At this stage, what has been your experience with treatment? I guess I would like to avoid any permanent destruction of my thyroid. I though I  read that 1/3 of people with Graves can spontaneously go into remission as long as no treatment is started.
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Avatar universal
I was just started on Tapazole 5 mg three times a day.  No thyroid scan. What can I expect on this medication at this dose.  I feel as if I have become a little shakier on the medication.
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Based on blood tests, my doctor is telling me I have Graves.How do doctor's decide if they need to evaluate you for thyroid cancer?

If you are diagnosed with cancer, do you have to have surgery or can RAI treat that as well?

Thank you for your help.
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Avatar universal
I have been going to an internist since day one - 11 years. Diagnosed me and saw to my treatment of RAI by making the arrangements and sending me to the right place.

If your thyroid issue  or your levels become a problem  you can always go to an Endo. until the issues is cleared up then resume back to your internist.

You want to make sure that the Endo. treats a lot of thyroid patients per year.  Most deal with diabetics and thyroid way down the line of their expertise.  You want an Endo who specializes in thyroid.

Good Luck.
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Avatar universal
ATD - tapazole

The goal with this form of drug therapy is to prevent the thyroid from producing hormones.  Thyroid hormone are still made but the thyroid becomes much less efficient.
The main shortcoming of antithyroid drugs is that the underlying hyperthyroidism often comes back after they are discontinued.
It may take several months to a few years for  hyperthyroid symptoms to subside. This is because the thyroid has already generated and stored enough hormone to keep it circulating at elevated levels. Once the stores are drained, hormone production should drop to its normal level. Although the disease may seem to go away entirely,  drug therapy (t4) might be needed to keep the thyroid operating properly.

The sustained remission rate for patients with Graves' disease depends on the size of the thyroid gland and the duration of treatment. In most studies, longer durations of treatment (12-24 months) and smaller thyroid glands are associated with longer remission rates compared with shorter courses of antithyroid drug treatment (6-9 months). Depending on the study, long term remissions are seen in 30-40% of patients completing adequate treatment courses.

The likelihood of relapse is shown to be directly related to the severity of the disease at the time of diagnosis, as measured by the serum total T3, and to the size of the thyroid gland.  

There are certain factors that may help to predict which patients are more likely to go into remission. Patients with Graves' disease who have significant enlargement of the thyroid gland or severe thyrotoxicosis with high T4 levels and increased ratios of T3 to T4 may be less likely to go into remission. In the setting of moderate to severe Graves' disease, antithyroid drugs may be used as temporary treatment to control the production and secretion of excess amounts of thyroid hormone while plans are made to proceed with more definitive treatment.

Major side effects:  
  Agranulocytosis — Agranulocytosis is characterized by a decrease in the production of white blood cells. This condition is serious, but affects only 0.2 to 0.5 percent of all people who take an antithyroid drug. Elderly people taking PTU and very high doses of MMI may be more susceptible to this side effect.

Agranulocytosis is more likely to occur within the first three months of starting treatment with an antithyroid drug. Doctors recommend that a white blood cell count be done immediately if you have a sore throat, fever, or evidence of any infection.

Once the antithyroid drug is stopped, agranulocytosis usually resolves in a few days, although serious illness and death are possible.

  Liver damage — Some people taking antithyroid drugs may develop liver damage. MMI and PTU are about equally likely to cause this side effect, but the type of liver damage seen with PTU can be more serious. Most people recover fully when the drug is stopped.

  Aplastic anemia — A rare, but very serious complication associated with the use of an antithyroid drug is aplastic anemia (failure of the bone marrow to produce blood cells).

  Vasculitis — Another rare complication, associated primarily with the use of PTU, is vasculitis (inflammation of blood vessels).

There also have been rare occurrences of hepatitis and death of liver cells (hepatic necrosis). Failure of the liver due to hepatic necrosis may lead to severe brain swelling, gastrointestinal bleeding, and death.

Less serious side effects: The most common side effects are related to the skin and include rash, itching, hives, abnormal hair loss, and skin pigmentation. Other common side effects are swelling, nausea, vomiting, heartburn, loss of taste, joint or muscle aches, numbness and headache.

When a person is off the ATDs for a long-enough time, technically a year or longer, then it is called "remission." But remissions by definition, is temporary. The antibody levels could rise again, and make the person hyperthyroid again.

None of the treatment options affect antibody levels. The most ideal treatment will be one that can precisely interfere with the specific antibody that is making us ill, without affecting any other antibodies,whose presence we need. Medical science seems to be a ways away from that ideal treatment. But the treatments available to us now can make us well and healthy again, so that is what is important for now.

Hope this answered uour question.
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Avatar universal
Another question.....Now that the diagnosis of Grave's has been made...who manages my therapy? I am supposed to meet with my internist to discuss treatment options. Should the internist be referring me to an endocrinologist? Also, what should I look for in an endocrinologist? Thank you so very much for your help.
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Avatar universal
Thank you for the information. What about the initial use of tapazole?
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Avatar universal
Most everyone with Graves' disease is initially hypothyroid and it's usually not mild. Some people develop GD after being overtly hypothyroid and on thyroid replacement hormone for several years.

A person could go into spontaneous remission, but how long will it take ? it could take years and how much damage will it do to your system before remission is achieved? Years ago before there was treatment 50% of people died of Graves'. Do you want to take that risk? as well as doing irreversable damage to your body?  Grave’s is a systemic disease which can affect many organs besides the thyroid.

I didn't have that many symptoms either,  the obvious weight loss and high energy.
However, If your tests show that you are hyperthyroid, you are sick! whether you feel it or not. The cumulative effects of the excess thyroid hormone may not show up at first, so you might not feel sick. But over time muscle loss and other problems grow. You do not want to wait until you do feel sick to get treatment. If you don't feel sick the "fix" will be quicker and easier eith little to no time spent healing. The longer you wait the sicker you get, the longer it will take before you feel well again.

Even though the RAI goal is to kill off all thyroid tissue, there can be active cells left after RAI.The antibodies continue to do their  work and this is why we need to continue to be monitored.
Minor adjustments of replacement hormone can put us rapidly back into normal levels so that we can continue to feel well

It is  assumed that the ablative dose of RAI destroys all or most of the thyroid tissue, however it may not.
Some doctors try to adjust the dose of radioactive iodine to destroy only enough of the thyroid gland to bring its hormone production back to normal, without reducing thyroid function too much. The remaining tissue can be stimulated to produce more excess hormone by increases in antibody action, and can also eventually be destroyed by antibody action.
Other doctors use a larger dose to completely destroy the thyroid, depending on your thyroid condition and how severe.

RAI effective time is up to 6 to 12 months and I have read up to as long as 24 months, so in most cases the destruction of thyroid cells is complete by then.  However, "It's known that thyroid tissue continues to be destroyed for up to 10 years after ablation."

RAI only destroys thyroid cells because the only place that iodine goes to in the body is the thyroid gland. RAI is not "toxic" to the body, in general. It is toxic to thyroid cells into which it is taken. There are very few risks associated with the ingestion of radioactive iodine when it is administered in doses that are commonly used to treat Graves' disease and other forms of hyperthyroidism.

We are only truly hypo if we are not on replacement hormone, or on an adequate amount of replacement hormone. Replacement hormone is chemically identical to the body's own T4 Thyroxin.                            
We are only going to "be" hypothyroid for a brief period of time if at all, depending on how soon it is caught or caught before going too hypo, however it is no big deal.  

Good Luck!    
                
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